Living with a rare cancer means living in a world few people truly understand — and using that experience to drive change, hope, and action.

My Journey with a Rare Lymphoma

When your cancer is rare and incurable, the journey becomes even more complex — filled with more questions than answers, more uncertainty than clear direction.

I live every day with mycosis fungoides, a cutaneous T-cell lymphoma, that affects the skin and immune system. It’s a disease I can’t outrun or “beat.” It’s a reality I carry with me — but it does not define me.

Instead, it fuels my passion: to speak, to advocate, and to help others find strength in their own stories. It even compelled me to start a podcast about my experiences.

What It’s Like to Live with a Rare Lymphoma

• Invisible battles: On the outside, you may see patches, and signs of treatment. Inside, there’s a constant fight for health, for hope, and for normalcy.
• Navigating a broken system: Rare disease patients often face delayed diagnoses, limited treatment options, and exhausting insurance hurdles.
• Choosing action over fear: Living with lymphoma has taught me to lead with resilience, speak up for others, and push for better systems that don’t leave rare disease patients behind.
• Celebrating small victories: Every good lab result, every day of energy, every moment of connection — they all matter.

Why I Share My Story

Sharing my story isn’t about seeking sympathy — it’s about building understanding, empowering patients, and challenging healthcare leaders to truly listen.

Through speaking engagements, advocacy work, and personal outreach, I use my experience to:

• Humanize the patient experience
• Push for better, more inclusive care
• Inspire resilience and leadership in the face of uncertainty

Because no one living with a rare disease should feel invisible.

Because every story has the power to spark change.

Invite Me to Speak

Whether you’re hosting a healthcare conference, leadership retreat, advocacy event, or patient summit, I would be honored to bring the rare disease experience to life for your audience.

Topics include:

• Bridging the Gap Between Patients and Providers
• Living with Rare Cancer: The Emotional and Physical Realities
• The Power of Patient Advocacy in Healthcare Change
• Leading Through Uncertainty: Lessons from Life with Rare Lymphoma